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FunTimes

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Posts posted by FunTimes

  1. I found that getting the script for the o2 from the doctor was only half the battle. The o2 company's around me either wanted charge me a tun of money per tanks monthly rental or said they do not service Cluster headache patients. I finally found one place that I could talk to and they worked with me, we found that it would cost me less money to pay out of pocket for O2 then it would if insurance paid for it. I get 2 m60 tanks filled 3 times a month for 90 bucks and I have 4 E tanks that cost 15 each fill. they come to my house and swap the tanks out. It took about a month of calling and fighting with different company's in my area but I just googled the list of places and started from the top. I drove and picked up my own tanks from a few places and tried to swap them out the next day and they upped the price because I was causing to much paperwork, I had one place that would not answer the phone when I called them after a few tank refills. You will come up against all kinds of things but if you just keep calling or have someone you know at a doctors office call for and with you you will fins someone that will work with you.    

    • Like 1
  2. Well I hope you feel better after getting that off your mind. We have all felt like this and gone through the same type thing in the past.

     I would say read up on Batches vitamin D3 regime, this helped me cut the pain level way down and also cut a few attacks out per day. I am chronic so I never really get a full pain free day. you can also read up on how to get welders oxygen setup and start aborting with the o2 to help get you off triptans and other busting blocking meds. 

    I would recommend reading everything you can  on this site and dont be afraid to ask questions 9 times out of 10 someone else has dealt with what you are going through. 

    welcome aboard, you are in good hands here. 

    • Like 1
  3. Mal

     

    I also had issues with doctors and getting oxygen. I had more of a issue of getting a supplier of the O2 then I did with the doctors writing me a script. I have had places flat out tell me NO they dont supply to cluster headache people. I did get my prescription and started to call the top of the medical supply places in my area telling them I will pay for it out of pocket and finally landed with one. It took about 2 weeks and I found out that it is less money for you to pay out of pocket for the o2 for me then it is to use insurance and one less thing to deal with.    I do not care about the regulator and mask they o2 place sent me to use, the mask is way to small and lets air in and the regulator is at a lower flow rate. I order my o2 mask off of the clusterheadache site and the regulators off amazon. 

    This site is a great place to be. Look around for a few hours and ask a tun of questions. use the search feature at the top and I am sure you will find information from someone who has tried it.   

  4. I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now.

    I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head..

    Good luck and let us know how you do.

    • Like 2
  5. I can also vouch for the D3 and O2 i found about from this site. I have not gotten total relief from one or the other but I did cut pain and length of my headaches down and the best part is I no longer use triptans  for aborting my pain. I should not say never, I will take it but maybe once a month just for a real head banger.

    I feel your pain and also get 4 to 6 a day but they are now manageable, I too get very frustrated at times and think nothing is going to help me but then think back to before I had this site to read other stories. You are not the only one and somebody always has it worse off then you do. With time and trial and error you too will find something that will help ease your pains and you will be giving advice to others. 

    I wish you the best of luck and ask a tun of questions and you will get true answers from others who have already tried it, not like a doctor who may have read about something one time and it sounds like it should work.

     

    Oxygen will become your best friend..

    • Thanks 1
  6. As far as breaking a cycle I can not help you with that but what I have done in the last year or so is start the D3 regimen and obtained oxygen to about clusters instead of taking any other meds. 

    The D3 helped bring the clusters down in length and pain level. The oxygen aborts them with no side effects. you can find much more information on both by using the search function. 

    • Like 2
  7. As far as the O2 ad insurance go I have fought with just about every oxygen supply place in my county. I have found that with MY insurance company they charge you more for the monthly tank rentals and refills then paying on your own. I found a small medical supply store that would sell wheelchairs, walkers and things like that that would give me E tanks for 10 bucks each if I paid on my own but that guy was unreliable and about an hour drive to his place. I  found a few places that flat out said no to cluster peopel and finally found on that will deliver to my house. I currently have 3 M60 tanks and 12 E tanks. The place I get refills from only knows about 2 M60's and 4 E tanks and will give me 3 refills a month on the M60 for 85 bucks and 15 each E tank, all paid without insurance. If I were to use inc it would cost over 300 for the same service. I just called and talked to the billing department and worked it all out.  this is a larger company, part of QMES company that serves from New York to Virginia. I dont know what area you are located in but maybe they can give you a name of a place near you? 

    Getting oxygen was one of the hardest things that I had to do so far dealing with clusters but by far the most rewarding as far as pain relief. I was taking 3 or 4 shots a day and eating pills like candy before and now I just down a 5hr drink and put the mask on. Dont get me wrong, I still get a good one about once a month that I want to put my head through a wall with but they are much more manageable now. In addition to the O2 I also do the D3 and bust with MM to help manage things. I have not yet found that sweet combination that gets me pain free for any length of time but everything does help a little and when it is all said and done... I am still here so something is helping. 

    Here is the link to the supply company I use, Like I said I don't know if you are in the coverage area but maybe they can point you in the right direction.

    http://www.qmes.com/

     

    • Like 1
  8. I am asking because I did do this study with no positive results. I did read that things were positive in the European study but can not find anything on the study here in the US. I had mine removed and still have numbness in the roof of my mouth upper lip and nostril on the right side. I do not regret doing this study because you dont know if it will help if you do not try and just because it did not work on my I was wondering is anybody had success with this.  Just curious. 

  9. I was taking sumatriptan about 5 times a day at one point. I had both the shots and the pills. Pills took about 30 minutes to set in the shots in about 5. I then found out about the O2 on this site and gave that a try and kept the triptan as a backup if I could not get oxygen or did not have it with me. I then read about how triptans can make things worse if taken to much and since I knew I was way over the recommended daily dose I figured I would stop them all together. I stopped on a Friday night and had a hell of a weekend rolling around in bed with non stop headaches but it was well worth it. I still am getting headaches on a daily basis and I am working on that with the vitamin D and M but I do not have them like I did when I was eating the sumatriptan for every headache! I actually had my first pain free day yesterday for the firs time in a long time. I still keep a triptan pill or 2 with me at all times just incase the shit hits the fan but only take that as a last resort. I maybe take one every other month. Finding a o2 supplier to get me enough delivered to my house as often as I need it was a hard thing to get done but with a little yelling and fighting I now have a place that will deliver next day for me with a phone call. Fingers crossed that they dont have a change of management and I need to start my fight over again. 

    Best of luck to you and I would get that o2 tank in next to your bed as soon as you can. 

    • Like 1
  10. I was put on Verapamil 240mg to be taken 3 times a day, This made my legs feel tired all the time so I tapered mine back to one time a day in the morning. I did not notice much difference in the amount of clusters of intensity of them when I cut back. From what I hear the extended release does not work as well for some people. I also get hit as I am sleeping and just started to take benadryl along with the D3 regimen and things are starting to get better for me now. I also spent the last few nights sleeping in a recliner to try to keep my head elevated a little and that also helped. 

    This does not answer your question but I hope it gives you a few tricks to try out. 

    • Like 2
  11. Thank you to all the advice, I am now on day 3 with NO Sumatriptan, the first day sucked but things seem to be getting better. After getting the correct o2 regulator and the better mask for it the oxygen is doing the trick so far. My wife and I will be driving up to Connecticut this week for more details on the study they are doing with the Psilocybin, I will let you know how that turns out. Not out of the woods yet but I think I can see it coming. 

     

    Thank you all for your replies and advice. 

    • Like 1
  12. Thank you both for your feedback!

    I currently take 720mg total Verapamil daily and would love to stop with the Motrin but I think it is a mental thing that I just need to overcome. I had my blood pressure tested and was told I can not up the Verapamil at this time. I am a big coffee drinker and at one point cut it out of my daily ritual all together thinking it may decrease the amount of headaches I get in a day, but that did not help at all. I will try the 5 hour energy trick to see if that helps at all.  I have given up drinking alcohol all together as that seems to be a trigger for me. I have read about the busting techniques here on this site and am interested in trying them all. I have printed out the D3 regimen to read over and think I can do that when I am in the study. The next study I was getting into is the one on the home page here for the Psilocybin in Connecticut. It is only about a 3 and a half hour drive from my house outside of Philadelphia. I am open to try anything as the clusters are non stop and I don't think anything can make it much worse. I know that I can get a placebo but after a set amount of time they usually bring you back in for the real thing. The only reason I join the studies is to try to find a solution that may one day be something we can all legally do to help with our issue. I would rather not take the triptans as I feel they will cause other issues in the long run. I currently take it in pill form, i have had injections in the past and they do work fast. The injections that I had were a compressed air type that shoot the medication into your leg, I have had about 6 of them that did not work (failed to fire off the medication). The insurance that  I have does not pay for anything until I meet a $6,000 deductible so I kind of shy away from getting them because they are about $200 a shot for me. 

    The longest PF streak I have had in the last 4 years has been 5 days. the last 3 months have been hell with up to 5 hits a day. My family is very understanding  and they do what they can to help me out. My wife must be a saint, she will stand by with a box of tissues, bags of ice, water bottles and a hand full of pills for me. I just do not know how to repay her. I can only treat her to so many steak dinners! :) My wife also found something about putting Frankincense oil on the roof of your mouth to about the attack. It does seem to help at times but have not seen that mentioned in anyone's bag of tricks yet. She just puts 2 drops on a small piece of paper towel or a tissue and puts it on my tongue then I hold it to the roof of my mouth for a minute and spit it back out. 

    I do have better supplies coming in to get this oxygen set up the proper way and find it kind of odd that the doctors do not have a setup that fits our needs. I was in the hospital ER one night and I did not even get a aspirin to help me, so fed up with the lack of help I just got up and walked out only to get a bill from them for no help at all. 

    All this crap is going on on top of dealing with every day life.. I just wanted to vent here a little as I know you all deal with the same if not worse.

    Thank you for responding and I will be sure to read on and on and on. 

  13. I have been dealing with Clusters for about 4 years now and have viewed this site several times over the years. I created a login this week to just release a little. I started out thinking I needed a root canal due to headaches and had that done with no relief. I was then sent to a different oral surgeon who knew I had cluster headaches as soon as I walked in the door of his office. I was then sent to a neurologist who seems to be on top of his game with the newest cutting edge treatments for clusters and he set me up with a clinical trial for a stimulation implant that went into my cheek. I have been in that study for a year and a half now and it does not seem to help me.

    I am on the verapamil 3x's a day, Motrin like candy when a hit comes on and sumatriptan to try to kill the pain. I have tried oxygen in the past with no luck. Ice packs and rolling around on the floor until the pain lets up. I broke my hand from hitting the floor during a bad night of headaches and did not know it till the next morning. After reading about the oxygen on this site over the last few weeks I decided to try it again. I picked up 3 tanks this past Monday and gave it a try 3 times the first day. I only got the crappy mask that came with the tanks and I could not get the high flow regulator but I figured that was better then nothing and I had the headache anyway so what the hell. It seemed to help on the first go around but knowing I needed the better mask and regulator I went on a hunt for the better tools. I ordered a regulator from amazon that will let me get the better flow rate and a recommended mask from another cluster site so I hope that with the correct setup I will have much better luck.

    I am not really sure why I am posting this because I know that many more people have it much worse off then I do. I only get 2 or 3 headaches a day and 2 out of the 3 only last about an hour average. I was just wondering how to manage family? I have a wife and 3 kids that also have to live with this, how do I not put the burden on them? They are great and jump at the chance to help me when I need it but I never thought something as small as a headaches could cause so much feeling of separation. I am signing up for another trial to see if that will help me out at all but first need the o2 to work because I can not take any triptan for 2 weeks before the study starts. 

    Has anyone else tried any of the clinical trials with any good results? I figured I should try that route to help us all find some kind of treatment to better our lives.

    That is about all I have to say, Thank you for taking the time to listen to me ramble on a little.

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